Friends With FOP

Many days, Miranda’s FOP fades into the background.  Yes, we have to be careful, and do a few things differently, but most of the time we just think about Miranda and don’t focus on FOP.  Today, however, was not one of those days…

Today was a day for dealing with things related to Fibrodysplasia Ossificans Progressiva.  First, it was time for Miranda’s monthly visit with her physiotherapist/swimming teacher.  Last week we just went swimming on our own, but this week Miranda and I met her therapist, Andrea, at the pool.  We went to CG Brown Pool here in Burnaby, which is an older facility but has a very nice “tot” pool, which is only up to Miranda’s chest at its deepest.  Andrea and I are working on teaching Miranda some simple principles of swimming. 

Andrea noted early on that Miranda will have trouble swimming on her stomach, since she can’t bend her spine to raise her head out of the water.  Andrea’s focus, therefore, is on trying to get Miranda to learn to swim on her back.  One of the most basic parts of swimming is a float – Miranda can’t float yet, but was very proud to show Andrea that she has learned to relax on her back in the water and stretch her legs out straight.  I can hold her still in the water with just one hand!  She’ll soon be floating, I’m sure of it.  Andrea was impressed with the progress she’s made.  In addition to floating, we also tried to work on some arm movements.  That’s a bit harder, since Miranda has not a lot of motion left in her elbows, and even less in her shoulders – she can manage a smallish-sized scull with her hands, and doesn’t do that well yet.  She’s got a good, strong kick, though.  In general, things are coming along, and I think she’ll learn to swim.

Incidentally, a woman in the tot pool was watching us with big, compassionate eyes.  Miranda and her FOP sometimes provoke that reaction in people.

After finishing up at the pool, I let Miranda choose where we would go for lunch.  Normally we’d just go home for lunch, but today we had an early afternoon doctor’s appointment, so I wanted us to stay out.  Anyway, surprise surprise, Miranda was true to her 4-year old self and chose a certain red-haired clown themed restaurant…  She just can’t resist the lure of the free toy in the Happy Meal   She was delighted to get a new “Littlest Pet Shop” toy to add to her collection.  Restaurants can be a bit of a challenge for Miranda, since she has a hard time reaching things on the table if her thighs aren’t practically bumping the bottom of the table top.  Mickey D’s wasn’t a bad choice in this regard, however, since they had bench style seating – Miranda can get up on her knees and raise herself high enough above the table to eat.  I’m sure it’s not the most comfortable thing in the world, but at least she can manage that way.

Next we moved on to Miranda’s appointment with her pediatrician.  I like this doctor’s office – amazingly enough, we never wait more than 10 minutes to see our doc…  Sweeeeet!  Dr. T likes to see Miranda about once every 4 months, just to see how she’s growing, progressing and coping.  Today I had to talk to him about the fact that Miranda’s showing definite signs of FOP related hearing loss…  Sigh.  Apparently about 50-60% of people with FOP have some degree of hearing loss, which is thought to be related to subtle differences in the shape of the inner ear bones (and possibly also due to bony jaw fusions, but Miranda doesn’t have this problem yet).  Anyway, we’ve noticed that Miss M has been saying, “What?” a lot and we have to repeat ourselves often, so we need to get this checked out.  I also asked Dr. T to make a referral for Miranda to a children’s program which assesses seating and computer access issues – Miranda needs this referral because of her limited arms.

Otherwise, however, I was glad to tell Dr. T that FOP has been quiet recently for Miranda.  In the past 5 months or so, she had only 1 flare-up, and since it was on her back (already rigid), it didn’t cause any new loss of motion.  Dr. T also noted that Miranda is starting to lose some of her “baby fat” and become a bit leaner, which is good because she’s a pretty big girl for her age – at 4, she weighs about 44 pounds (she’s tall though, too).  Miranda is SUCH a good girl at the doctor’s office – she cooperates nicely, and doesn’t fight any part of the examination.  Maybe the temptation of the cool sticker the doctor always gives at the end keeps her well-behaved, ha ha…

After picking up Owen at his daycare, we then went home, where I dealt with the third FOP-related thing of the day.  I’m having an ongoing conversation with the other founding members of the Canadian FOP Network about some particulars of our group’s legal status.  We’ve been going back and forth on certain points, so I had to weigh in with a detailed e-mail on this subject.  While I worked on this, and did some other things, Miranda and Owen proceeded to bring every toy in the house in to the living room and make an enormous mess!  Greeeaaaat.  (OK, that part wasn’t FOP-related – FOP doesn’t seem to restrict Miranda in any way from making a room look like a cyclone hit it.)

So, that was our big ole’ FOP day.  And, I’m topping it off by blogging about it here…